Advance Care Planning: A Perspective

Of the Louisiana Health Care Quality Forum’s many initiatives, perhaps the most intriguing is its Louisiana Physician Orders for Scope of Treatment (LaPOST) program because of its unique focus on quality care for patients with serious, life-limiting illnesses. So when Nancy Zionts, COO and Chief Program Officer of the Jewish Healthcare Foundation (JHF) in Pittsburgh, traveled to New Roads, La., last fall to present her organization’s Closure initiative at a Community Conversation on end-of-life care, I couldn’t resist the opportunity to engage her in a Q&A about advance care planning, Medicare policy changes and the value of conversations about end-of-life care wishes.

A: “I think it’s a blessing and an opportunity, but there are also some downsides and potential work that has to be done. There’s been a lot of talk about the reason why we’re not having more conversations between doctors and patients is because there wasn’t a code or a way to pay them. But once you remove that barrier, which this legislation has done, it doesn’t magically make everybody ready to have those conversations. It doesn’t make consumers, patients and families ready to have those conversations, and it certainly doesn’t make providers any more knowledgeable about how to have those conversations.”

Q: In your opinion, what is the greatest barrier to acceptance of advance care planning as a critical tool in patient care?

A: “I think it’s the sense in American society that death is optional. I think it is just that cultural lack of understanding that this is something we will all face. I also believe that people have misunderstood the fact that advance care planning, once done, is permanent, and it is not. If your circumstances change, whether that’s your family, your health or your philosophical circumstances, pull it up and change it. It is not carved in stone, nor is it something that goes into effect unless you can’t speak for yourself.”

Q:When is the best time to think about one’s end-of-life care plan?

A: “Early and often. When and with whom you talk about it are important. So have these discussions at various stages of your life – with your parents, your children, your spouse, your grandparents, your grandchildren. I think National Healthcare Decisions Day is a great time to consider an advance care plan, but it doesn’t have to be the only day. How about around the Thanksgiving table or during a family reunion in the summer? These types of family gatherings can be a platform for such conversations.”

Q: What are your reflections on the Community Conversation event?

A: “The event was particularly heartwarming for me. You know, we call our initiative Closure because that’s really what we’re looking for, for families - that ability to understand and put in perspective that which is very natural, which is losing people. We all know people who’ve gotten stuck in their grief. And we met a woman who very bravely opened up and talked about being stuck in her grief.”

“We created a safe environment in which this woman felt that she could say something she had held inside for 15 years that was clearly eating away at her – that woman was in pain. So to watch her feel safe enough to open up, and then to have somebody else in that room go over to her, hug her and wipe her tears – that shows community. We could not have staged something to show those beautiful pieces. This is about individuals dealing with loss, and it’s about a community dealing with their responsibility to help in the healing and how we all move forward together.”